Hope and Courage

Living With Stage 4 Breast Cancer



View Nancy’s Memorial Service on LiveStream

Dear family members and friends of Nancy,

Just a reminder that Nancy’s memorial service will be held this Friday, January 6, 2017 at 7PM at Redeemer Presbyterian Church’s W83rd Street building (150 W. 83rd St between Columbus and Amsterdam). There will be a simple reception of appetizers and non alcoholic drinks following the service at the same location on the 5th floor.

For those of you that cannot make the service, you can watch it live at this link:

https://livestream.com/redeemer-nyc/nancystevenson

Memorial Service for Nancy Stevenson

nancy

Dear friends and family members of Nancy, my name is Rainy Day Worzella, and Nancy asked me to post this message when the time came.

Our dear Nancy went to be with her Lord and Savior Jesus Christ this past Tuesday evening, November 8, 2016. She wanted you to be part of the celebration of her homecoming memorial service. Please feel free to invite others.

The memorial service for Nancy Stevenson will be held on Friday, January 6, 2017 at 7PM at Redeemer Presbyterian Church’s W83rd Street building in Manhattan (150 W. 83rd St between Columbus and Amsterdam). There will be a simple reception following at the same location on the 5th floor.

In lieu of flowers Nancy has requested any remembrance gifts be sent to Astoria Community Church with a designation to be used by the “Mercy Ministry Team”, which did so much for Nancy and that helps people and families in need in her community of Astoria New York.

Send to:
Astoria Community Church
P.O. Box 8022
Long Island City, NY, 11101

Designated for: Mercy Ministry

Mercy Ministry and what they do: http://www.astoriachurch.org/mercy-ministry-team

To donate online: http://www.astoriachurch.org/donate

To all of you who have held Nancy up in your thoughts and prayers, thank you.

Rainy

Think Before You “Pink”

think-before-you-pink-copyThink Before You “Pink” – http://hopeandcourage.com/

 

The “pinking” of October for breast cancer awareness has become a huge money making marketing ploy to sell products that give no money to actual research, or very little. The companies are not transparent about how much of the donations go to actual research for a cure. Pink October has become almost a shopping party like experience.

Yesterday, Oct 13, was “Metastatic Breast Cancer Awareness Day which underscores a disturbing reality in breast cancer. Despite all the progress that has been made over three-and-a-half decades of the breast cancer movement, 40,000 women and men are still dying of breast cancer every year in America, primarily from metastatic disease.” This statistic has not changed for 20 years.

http://www.huffingtonpost.com/judith-a-salerno/a-clarion-call-changing-t_b_12460194.html

“If you look at the statistics, the mortality rates, the numbers of those who die of breast cancer every year have not declined significantly in the last 20 years,” says Christine Benjamin, SHARE’s Breast Cancer Program Director, and initially its Metastatic Breast Cancer Coordinator. “There’s a whole new movement, a lot of focus now on research for metastatic disease. People are looking at this and saying, ‘Nothing has really changed. We’re still dying. Our sisters are dying. Our friends are dying. We need to do something.’ So there’s a big movement to have more money funneled into metastatic breast cancer.” According to recent medical estimates, about 155,000 women (and some men) are living with metastatic breast cancer in the United States.

http://chelseanow.com/2016/10/when-breast-cancer-strikes-share-is-there/

When you buy into “pink” breast cancer awareness it’s fine as long as you realize the money you spend just goes into the product’s revenue and very little if any goes into real cancer research. Companies know if they just slap something pink on their product it will sell better in Oct.

  • Where to Put Your Money:

Pink October has served its purpose of breast cancer awareness ­–­ who isn’t aware now of breast cancer? What we need now is awareness of the organizations that spend most of their funds on actual research: these are some: Breast Cancer Research Foundation, Metavivor. METAvivors mission is quite clear, 100% of all donations goes towards metastatic research. Please check them out if you want more information. The Canadian Breast Cancer Foundation is one of those organizations, and is transparent regarding fund allocation.

About BCRF
 The Breast Cancer Research Foundation (BCRF) is committed to being the end of breast cancer by advancing the world’s most promising research. Founded by Evelyn H. Lauder in 1993, BCRF-funded investigators have been deeply involved in every major breakthrough in breast cancer prevention, diagnosis, treatment and survivorship. By investing 91 cents of every dollar directly in its mission, BCRF remains one of the nation’s most fiscally responsible nonprofits. BCRF is the only breast cancer organization with an “A+” from CharityWatch, together with Charity Navigator’s highest rating of four stars 13 times since 2002. Visit  www.bcrfcure.org to learn more.

There are more good organizations listed above under “Helpful Stuff” at the top of this blog page.

https://www.charitywatch.org/ratings-and-metrics/breast-cancer-research-foundation/117

Breast cancer doesn’t kill you until it metastasizes, 30% of women diagnosed with early stage 1 breast cancer will get metastatic breast cancer years later, and this seems mostly ignored within the Pink Ribbon culture.

Susan G. Komen has finally recognized that early detection does not mean a cure and that the numbers of deaths from breast cancer are the same today as they were 20 years ago. There have been no strides in lowering the death rate from breast cancer in 20 years.

So instead of buying those pink socks put your money where it will really matter.



Hope and Courage.com

posted 14 Oct 2016: http://hopeandcourage.com

I Was Interviewed for Hospice Patient Stories

 

Regional Hospice and Home Care Volunteer, Debbie Bodie interviews various patients and then writes an article for their website under Hospice Patient Stories.  She wrote an article about me this past week and here’s the link to the article on their website: https://regionalhospicect.org/patient-stories/nancy-stevenson/  I’m sharing it to show that even in the middle of the hardest times our lives still have meaning and purpose. There have been many times in the past few months I have prayed God would take me home. I found myself jealous of those that have died quickly. A friend, who’s brother died after a very long tortuous battle with cancer, said to me “Everyone wants to go to heaven but nobody wants to get on the bus.” Especially if the bus is a local that stops at every little local bus stop along the way for years. By God’s grace my focus has evolved here at Regional Hospice to truly taking one day at a time and seeing the value and meaning, and beauty, in each day no matter what my limitations are. I’m no longer praying for the end, now praying for grace for each day.

Terminal cancer takes things away from you year by year, week by week, day by day, and with each loss there is a grieving process, adjustment, acceptance. Yesterday, I took a fall in the bathroom, I passed out and could not get up off the floor. People came to help me and clean me up. It was humiliating and humbling. Now I’m not allowed out of bed without help, in fact if I try to sneak out of bed without buzzing for help a little alarm goes off. I can’t walk well even with the rollator/walker. More loss of physical independence, and dependence on others. But from my bed I can still have interactions with people and life through texting, email, messaging, talking with the many kind volunteers here, staff, and visitors. And hopefully I’ll still be able to do some watercolors on the table arm that swings out over my bed since I can’t easily get to the other table in the room I used to paint from.

In the Hospice Patient Story they show a watercolor of a stuffed white kitten my Mother sent me, she has one too. So I try to paint the item someone sends on a postcard and mail it as a thank you. While I’m painting my mind is clearer, and hopefully it puts a smile on their face when they get it. Below are a few other postcards I’ve painted since being here. When I first got here cut flowers really bothered my breathing but now that seems to have changed. These are painted postcards of flowers people brought when they visited.

Each day is a gift where even in your grief there is purpose and meaning to be found in this life here on this earth, not just in looking towards the next life. One day at a time.

iris

gerber-daisies



Hope and Courage.com

posted 9 Oct 2016: http://hopeandcourage.com

Furry Therapy Caretakers

Furry Therapy Dogs Taking Good Care of Meabbey-therapy-dog-lores

This is Abbey a Golden Retriever with her Mom and handler Roseanne. They visit me a few times a week.


Regional Hospice has a great group of volunteers including furry ones that bring peace, comfort, unconditional love, and soft velvety ears to feel.

bear-therapy-dog-lowres

Bear, a Golden Doodle who visits each week has the cutest head and body I love hugging. He’s wearing his working therapy jacket. All the therapy dogs and trainers go though intensive training before they can be certified to work with hospice patients.


sophie-therapy-dog-lowresThis is Raffi who gets up on the bed for doggy massages, hugs, and head kisses.


sophie-1

Sophie getting some doggy love, and me too.


There are other furry hospice workers too. I love animals and miss my BabyCat, so these therapy dogs provide that animal comfort only dogs and cats can provide. I never realized how important therapy dogs are until I needed them.

To learn more about animal therapy for hospice patients go here: https://www.hospicesect.org/about-us/pet-therapy



Hope and Courage.com

posted 24 Sept 2016: http://hopeandcourage.com

3 weeks now @ Regional Hospice

3 weeks now @ Regional Hospiceroom

This is a photo of a room like I am in. The couch opens into a bed for someone to stay over with you, which my sister has done as well as my friend Susan Pinto who has stayed over twice for a number of days. There are doors next to the bed that open out onto a patio.


 

Well, it’s been 3 weeks now I’ve been at Regional Hospice Care in CT and I feel better than I have in months. The first week here was a huge adjustment and recovery from previous weeks, being in hospital, and having 2 1/2 days to clear out my apartment and pack up only a few things to bring with me, and say goodbye to my precious cat. Now I’m settled in and so glad to be here. I almost can’t believe this place exists. Everyone is so nice and my room is strategically placed outside the nurse’s station so if i cough to much someone comes in right away. There are only 12 units/room here so you get very good personalized care. There is one nurses station for 6 units and a totally separate nurses station for the other 6 units. Take a look at the links below to see the place.

They have my pain under control without drugs that make me sick. Today I’m being taken off anti nausea medications to see if I still need them. I’m tired and spend quite a lot of time in bed, half my face is numb from the cancer pressing on nerves but it doesn’t hurt it just feels like I’ve gotten novocaine injections from the dentist and so I can’t feel anything on left side of face, gums, tongue…  It’s also affected my hearing on that side and now starting to affect my eyesight. But these are minor irritations compared to the pain and nausea I was having which is now under control – praise God!

website: https://regionalhospicect.org/

video: https://regionalhospicect.org/media/newsroom/video-gallery/

photo gallery: https://regionalhospicect.org/residence/hospice-center-photo-gallery/


Hope and Courage.com

posted 10 Sept 2016: http://hopeandcourage.com

Cancer Is So Limited

Cancer Is So Limited

Cancer is a powerful enemy. But it’s not all-powerful. It helps to remember there are things cancer cannot do:
WhatCancerCantDo

Cancer is so limited.
It cannot cripple love.
It cannot shatter hope.
It cannot corrode faith.
It cannot eat away peace.
It cannot destroy confidence.
It cannot kill friendship.
It cannot shutout memories.
It cannot silence courage.
It cannot invade the soul.
It cannot steal eternal life.
It cannot quench the spirit.
It cannot lessen the power of the resurrection.

—Unknown Author
Calligraphy by Michael Noyes

 


Hope and Courage.com

posted 22 Aug 2016: http://hopeandcourage.com

“It’s Always Something.” —Roseanne Roseannadanna

“It’s Always Something.” —Roseanne Roseannadanna

I thought about calling this post “The good, the bad, and the ugly.” The good news from my last post was short-lived as a week later I developed a blockage that had me sick to my stomach for 12 hours with vertigo. I was taken by ambulette (yes, those are my feet) to the hospice hospital wing @ Bellevue Hospital called The Haven. I was there for a week. All the staff was great but with a name like “The Haven” I was expecting a beautiful place and the reality was more like Arkham in the series Gotham. People disappeared in the middle of the night and you never saw them again. My roommate, Doris, died one night in the bed only a few feet away from me. I was glad to get out on Tuesday, with the blockage gone and medication adjustments to help with head pain without much if any morphine.

AmbuletteRidejpg

I’ve been on a waiting list for months for a nice live-in hospice place in Manhattan. There really are no places to go to live in NYC and only 1 such place associated with Visiting Nurse Services of NY hospice and it only has 8 units. My niece in Connecticut found out about a one-of-a-kind live-in hospice place in Danbury CT with 12 units and put my name on that list also. While I was at Arkham, I mean The Haven, a unit became available in CT. They wanted to transfer me directly from The Haven to CT but that would have meant never going back to my apartment again to take care of anything. You have to take these units immediately or lose them. However, I needed some time to go home since I was not expecting to never see my apartment again or my cat when I was taken away in the ambulette. I was able to secure the room in CT for a few days without actually moving in, so I had 2 1/2 days to close out an apartment I’ve been living in for over 30 years. Since I really was in no shape to do much my miracle team got the job done — thank you Josie, Rainy, Andrea, & Lauren! I can’t thank you enough and I’m eternally grateful.

It was very difficult to say goodbye to my life there — many shed tears. I knew in my heart this was the right decision and I felt God was orchestrating everything, but that does not mean things aren’t incredibly hard and almost unbearable at times.

The good news is I moved yesterday, Friday Aug 19, into the beautiful place in CT where everything is taken care of; food, medications, 24/7 nursing available… so I’m no longer trying to juggle and manage these things. I need more help and care now than was possible at home. With end stage cancer things change day to day, moment by moment. Nothing stays the same.

I’ll write more about this place in CT that I’m so so grateful to be in now. I just wanted to get an update out about my move.

Much Love, Nancy

Long Overdue Update

Long Overdue Update drugs-brain2

It’s been a long time since I posted and a lot has happened. I thought I’d update in bullet points and then later fill in some gaps in more detail.

  • Hospice:

Hospice has been great. Once I got on hospice many of my logistic and organizational problems where taken care of. I see a hospice nurse & social worker weekly — they are wonderful. I get all pain medications and physical items like oxygen, hospital bed, etc through hospice.

I now have a Home Health Aide I private pay to come 3 days a week who helps with day-to-day things. I only shower or wash my hair when she is here, using a shower stool. As things progress I will have more around the clock care.

  • It Takes a Village:

It takes a village to raise a child and it takes a village to help someone live well while dying. I have been incredibly blessed with friends and church family who have come alongside and made this journey so much easier. Earlier this year, since I do not have a primary caregiver to help on a daily or weekly basis, I was worried my needs would not be met and I would be alone trying to figure this all out. God has shown me I am never alone and he has provided a huge family of loving, kind, patient, helpful, people that together are a collective primary caregiver meeting all my needs from coordinating care, and doctor’s appointments, traveling with me to appointments & blood transfusions, organizing & coordinating things I’m too overwhelmed to see to, making multitudinous phone calls, doing my laundry, bringing food, cleaning, shopping, doing dishes, maintaining the air filter/humidifier, cleaning the oxygen tank filter, bringing in the mail, checking up to see what I need each day, holding my hand, letting me cry and making me laugh. I am oh so grateful to you all.

  • Blood Transfusions:

I’m now living from blood transfusion to blood transfusion, like a vampire living on other people’s blood. Because of extensive cancer in bones the bone marrow is no longer able to make red blood cells, which carry oxygen to every part of the body/brain and also carry carbon dioxide out to the lungs where the toxin is exhaled from the body. Without the new blood I’m getting through transfusions I get weaker and weaker, and have more inflammation. The first transfusion I had in May was miraculous in the result and even allowed me to travel to Florida to see my 92 year old Mother who I thought I’d never see again.

You can get blood transfusions while on hospice as long as they are helpful, the benefit usually lasts a few weeks, however they do not stop progression of disease and get less and less effective. The last one I had on July 16 did not help as much. Also, you can only get a transfusion if your hemoglobin (HGB) is under 7.1g/d. Normal hemoglobin for women is 12-16g/d. Mine was 6.3 the first time I got a transfusion. So I have to wait until I feel really awful before I can get a transfusion.

  • Progression of Disease:

The last blood transfusion did not help much and I am not able to stand for more than a few minutes without feeling dizzy. I cannot sit up for very long without needing to lie down. When I’m lying down I feel pretty good and do not have shortness of breath. However, I am using the oxygen more and more for longer periods of time.

The disease is now in my brain, which I’ve suspected for sometime as I’ve been having headaches on the left side of my head for months that have been getting worse. Anyone with cancer gets worried when they have headaches because with many cancers, including metastatic breast cancer, the brain is one of the primary soft tissue places for metastasis, as are the lungs and liver (I have extensive liver involvement as well.) I was hoping the headaches were due to Ibuprofen rebound headaches but no painkillers could get rid of them and that was because they were caused by the disease pressing on a nerve/nerves in my head. The left side of my face has been constantly numb and that is also due to pressure on the nerve/nerves.

  • Pain Control:

I feel like writing an article called “The Myth of Pain Control in Advanced Cancer”. Everyone I know that had advanced cancer struggled with pain control and that’s why people at funerals say “Well, at least they are out of pain now.” I did pretty well on Vicodin for a while but that damages your liver so I was told to take oxycodone or hydromorphon. I’ve never really been able to get control of my pain until this week when I was put on Morphine, Gabapentin for nerve pain, and a steroid to reduce swelling in the brain, Dexamethasome. If you have nerve pain no other painkiller will help except one that specifically targets nerve pain. I am so relieved that for now I can control the head pain and the morphine also works on my back and other areas of pain. Before this week I’ve been covering my head and back with ice packs while taking oxycodone or hydromorphon — both make me sick to my stomach even with the antinausea pills. I was worried any opiate derivative would make me nauseas but Thank God the morphine does not make me sick. (How do people get past the nausea (not to mention sever constipation) to even get addicted to opiate drugs?!?)

I am grateful to be living at a time and in a place where painkillers exist and so much help is available. It humbles me when I think about how most of the world suffers. Even as my disease limits my life it has given me a much more comprehensive perspective.

cropped-HC-watercolor-2.jpg

“Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day… So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal.” —2 Corinthians 4:16-18

 


Hope and Courage.com

posted 08 Aug 2016: http://hopeandcourage.com

Hospice: Benevolent Strangers

Hospice: Benevolent Strangers

USA - CIRCA 1999 : post stamp printed in USA shows Hospice Care, circa 1999

The bad news is I’m on hospice — the good news is I’m on hospice. So the bad news is obvious, and the good news is hospice, through Visiting Nurse Service of New York (VNSNY), is a well-oiled machine filled with helpful, nice, capable people. Much of my frustration with trying to get help, services, and information, was resolved when I signed up with hospice.

I started on in-home hospice a few weeks ago. I’m so grateful to be on hospice now as they offer a specialized team that helps you through the process of getting the help you need, providing you with home health aides, an RN, managing your symptoms (primarily pain control), they help manage nausea, provide oxygen and any durable medical equipment like canes, walkers, rollators, wheelchairs. A hospice social worker helps you navigate your insurance company, and basically gets you the help you need without you having to be the one to make a lot of phone calls when you least feel capable of coordinating, managing, and facilitating your own care. For example I was inquiring with my oncologist, cardiologist, palliative care doctor, and insurance, about getting oxygen for the shortness of breath I have when I feel like I can’t breathe. This seemed impossible to get, however, once I signed up with hospice, oxygen tanks were delivered to my apartment the very next day! Also, it was thanks to my beloved co-workers that I had a rollator (walker with a seat) as that too turned out to be impossible to get through insurance even with many follow-up phones calls, prior to hospice being on board. A friend in the neighborhood, James Bond (yes, that’s his real name) also gave me one of his Aunt’s rollators so I have one for inside the apartment and one to keep downstairs to use if I leave the building. Now through hospice any equipment I need will be delivered right to my door.

Hospice is a wonderful service especially for someone like me who does not have a primary caregiver, which is usually a husband, wife, significant other, grown child, or family member. With or without family to help you on a daily or weekly basis, hospice is a great resource to help you through.

People generally think of hospice as something to call in a week or two before they die. The truth is you should get them involved sooner than later so you can actually enjoy the services they provide. Some doctors hold onto their terminal patients for too long and even though they know the patient has very little time left they may not inform patients about the benefits of hospice soon enough.

There are many, many, hospice providers as hospice is not one company or organization. I chose VNSNY as my hospice provider because they have a great reputation in NYC and a friend of mine has worked with them for may years. If you are looking to pick a reputable hospice provider for a loved one, or yourself, it’s really important to do some research on the various providers. Not all hospice services are the same, and differ greatly from state to state or even county-to-county.

You must generally be considered to be terminal or within six months of death to be eligible for most hospice programs or to receive hospice benefits from your insurance.

Most programs concentrate on comfort rather than disease abatement. By electing to forego extensive life-prolonging treatment, hospice patients can concentrate on getting the most out of the time they have left, without some of the negative side-effects that life prolonging treatments can have.

hospice-isGenerally, once enrolled through a referral from a physician, a patient’s hospice care program, which is overseen by a team of hospice professionals, is administered in the home. Hospice often relies upon the family caregiver, as well as a visiting hospice nurse. While hospice can provide round-the-clock care in a nursing home, a specially equipped hospice facility, or, on occasion, in a hospital, this is not the norm.

There are 4 levels of hospice care and I am on level 1 right now. I’ll stay at home as long as I can however once I need more care my friend Susan is going to come live with me and be that primary caregiver that hospice will need in the home. I am so blessed to have a friend that is willing and even available to do this. There is only one live-in hospice facility in Manhattan that is not a hospital setting. I’m on the waiting list to get in there which is about a 7 week wait. It’s called The Shirley Goodman and Himan Brown Hospice Residence. Once I go there I would not be coming back home.


Thank you Sherri Fillipo for the hospice graphic. Sherri Fillipo’s blog about “living and dying with metastatic breast cancer” is one of the blogs I follow and recommend still on my blog. See below for one of her informative posts about hospice. Unfortunately, Sherri died recently on April 10, 2016. Her blog is still up and a wealth of information for anyone dealing with stage 4 breast cancer: http://www.sherrifillipo.com

I Made the Call: This is What I Learned


For more info on hospice:

http://www.sherrifillipo.com/2015/07/15/i-made-the-call-this-is-what-i-learned/

https://www.medicare.gov/what-medicare-covers/part-a/how-hospice-works.html

http://www.aarp.org/relationships/caregiving-resource-center/info-08-2010/elc_facts_about_hospice.html


Hope and Courage.com

posted 127 May 2016: http://hopeandcourage.com